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Life With MS

31st May, 2017

Life With MS

Today marks World MS Day, a condition most people know about, but many don’t know the meaning of. This years’ theme is ‘Life With MS’ and speaking as someone whose mum has multiple sclerosis, it’s a topic that runs very close to home.

I’m Chloe, the Marketing Assistant here at Your World and my mum, Tracy, was diagnosed with relapsing remitting MS (RRMS) in 2012.

Although my mum’s life has changed since being diagnosed, she’s always remained very positive and she’s collected some great anecdotes along the way. Seeing as this years’ World MS Day theme is ‘Life With MS’, we thought we’d give you an insight into her life, along with some advice for people who may have recently been diagnosed.

But first…

What is MS?

MS is a neurological disorder that effects around 2.3 million people worldwide. It’s where someone’s immune system attacks the protective layer that surrounds their nerves. Mum says this image she found on Facebook explains it better than anything she’s seen before.

Living with MS - Demyelination  

There is relapsing remitting MS (mum’s type), primary and secondary progressive MS.

What Made You Go to The Doctors?

I went from walking into walls on my left, to cups of coffee falling through my hands and then literally falling, in a full ‘bowed down and worship’ position, in front of my new manager. This is when my colleagues, Sarah and Katie, pretty much packed me off to the GP.

What Happened After You Went to the Doctors?

The GP referred me for an MRI and soon after, I was seen in neurology at Northampton General Hospital. I was really fortunate that I was prescribed medication, including disease-modifying medication, really quickly.

After this, it was like my body read up on all the new things it should try out. The first comedy symptom, was electrocution of the legs every time I walked the dog. I was walking down streets twitching like Ant and Dec in their Fairway Of Fire Challenge- not my best look. Pregabalin swiftly dealt with that.

Next the bed clothes viciously attacked me and kept me awake. Amitriptyline fought them off and now sends me to sleep.

I have two amazing nurses, Kathy and Emma, as well as a specialist consultant, Dr Raja. I must say, these guys have really given me confidence in my body again.

Can You Describe Some of Your Symptoms?

Some I find comical, like the electrocuted legs; I also do a Mexican wave when I lose balance (my kid’s favourite)! Even with medication, I have invisible spiders crawling over me at times. In the early days, it was so distracting, I actually stood up to prove to myself there weren’t spiders all over the loo (although, once there was!).

The not so comical, include the pain in my left thigh, which feels like a knife twisting in it, and severe cramping in my arms and legs. The most debilitating and consistent symptoms, are the fatigue and problems with my cognition. Sometimes, I have to give myself clues to every day words before I can remember them.

How is Day to Day Life?

I’ve learnt I can only manage one significant activity a day, due to my fatigue. I’m learning to charge my batteries by sleeping more prior to big events, knowing that the day after will be a complete write off- so I just plan.  My Vicar eloquently put it that evenings are not my friend!

I’ve had to drop down to short part-time hours, which enables me to pace myself better. I also pace my driving because I don’t want to become stranded somewhere, too tired to come home.

I can’t regulate my body temperature well, which means I often overheat. The back of my head melts, so now I have my hair as short as possible. I’ve also learnt it makes more sense to sleep in the day and iron in the cool of the night.

My mum and I are a right old pair when we’re together. Mum has just started the dementia road and we have the funniest conversations due to our forgetfulness. I have to own that I forget everything and encourage people to pick me up on things I forget.

What Would Your Advice be to Someone Who Has Just Been Diagnosed?

  • Grace. Grace when others say the wrong things whilst trying to help and grace for yourself when you can’t manage the things you’ve always done before. Slowing down is not failure. The hardest thing’s to learn how to accept your new self and body.
  • Surround yourself with positive people who encourage you, laugh at you and empower you
  • Write EVERYTHING down- shopping lists, chores, questions and relapse info for your MS nurse... It’s also good to write down the funny stuff.
  • Use phone alarms for everything!
  • Create rituals to help with sleep, just like you do for babies. Think of your sleep as a treat. I have a huge fluffy blanket and sometimes put a heavy feather pillow across myself.  
  • Pace yourself. I’ve yet to find any advice that helps with fatigue, especially if you have to work full-time. Perhaps a cleaner is cheaper than halving your hours.
  • You will get depressed- not because you’re sad, MS literally messes with your head. Get help and remember your GP knows it’s a symptom and not you.
  • Cook in advance.
  • Live for today! Today is the best your health will ever be- just sleep it off tomorrow!

To find out more about World MS Day, click here.